I have never been invisible. Not before my diagnosis or after. I have a voice. I have opinions. And these days my dance card is as full as ever.
I want to use my voice to make a difference in the world. I want to change the face of disability into the face of ability.
Anyone with an illness, from asthma to cancer to every ailment in between, is the same person they were before their diagnosis. Our dreams, aspirations, hopes and ideas remain unchanged.
The only difference is how we make our dreams come true.
Having an illness doesn’t change who we are. Seconds before our diagnosis and moments afterward only changes the physical part of us. It will not, and should not, change the core of what makes us uniquely who we are.
Research. Learn. Rail against mediocrity in all forms, and against anyone trying to tell us that we can no longer be the person we once were.
We must now be our own best advocates, and our own best friends.
We must trust our instincts and hold tight to our dreams, because together they will point the way toward achieving a life that still matters. The map may look different, but the destination is the same.
We must always remember to keep our eye on the prize.
I recently began watching the serial drama “The West Wing” that originally aired on television from 1999 – 2006. Primarily set in the West Wing of The White House, it gives us an inside look at the day-to-day operations of the President of the United States and his senior staff.
It was the first time a main character of a popular weekly program had the same affliction I have, and the first time it was accurately portrayed.
Hollywood finally got it right.
Josiah Bartlet (played by Martin Sheen) was diagnosed with relapsing-remitting Multiple Sclerosis. His wife, chief of staff and physician quietly managed his grueling, stressful schedule to stave off any exacerbations from his MS.
This fictional character portraying the most powerful man in the free world had a disability. He was a brilliant, vibrant and compassionate character, and although he was fictional, an important message was conveyed to audiences about having a disability:
Living with a disability is not the sum total of who you are. It is what you do with your abilities that define you and brings value to you and to the world.
My road map has changed many times over the years. I’ve been bruised, battered and kicked around by my illness. And every time I was knocked down, I became stronger with a new resolve to do the best I can within my abilities.
Like Josiah Bartlet, I choose to bring value to myself and to the world.
I write about the roadblocks I've encountered and overcome as a way of empowering others to do the same. Together, we will change the face of disability into the face of ability by doing what we do best - being ourselves.
We are not invisible. We have opinions. And our dance cards will be always be filled.
This is a conversation that needs to continue, and you as the messenger have a powerful voice, Cathy. Your positive attitude is so inspirational and relevant to all of us, beacause who doesn't have a disability of some sort- physical, emotional, social, etc.? Proud to be your friend and so grateful for the lessons you have taught me.
Cathy, you are always such an inspiration and with the most amazing attitude about life! So proud to be your friend.
Bravo, Cathy, for this inspirational post. Our disability does not define us, it refines us.
Cathy,
Just beautiful. I love this "We must now be our own best advocates". I believe that is so true in life, whether one has a disability or not. Keep using your voice so that others may gain their own.
Estelle
Wonderful summation of what it must mean to live with a chronic illness or disability. I loved West Wing and watched eagerly, wondering how the MS would be handled, knowing my husband had similar struggles.
One of the most powerful things my ex said about his disease was that it would not define him. He was not his disease and though that thinking could feel extreme at times, it gave him power over his condition and allowed him to continue in that career and lifestyle.
Thank you for sharing your story, I know it helps others to see your truly empowered spirit and journey.
Cathy, you will never stop surprising me! You are a gifted writer because you draw your reader in and hold him or her there until you've said what needs to be said. Even though I was apparently okay with my own diagnosis of Myasthenia Gravis, you have no idea how inspired I've become after reading your articles over and over. Thanks and blessings for all your abilities and for the disability that made them shine the way they do.
Maritza
That's right, he did have MS. Glad it was portrayed accurately!
Cathy, your voice is helping change how people view people living with disabliities. Indeed you have a powerful voice. I loved the West Wing when it was on and completely forgot the "president" had MS.
Cathy - I applaud you for speaking out. People need voices like yours. My opinion differs a bit; I think an illness/disability DOES change a person...but not in a bad way. It makes a person more resolute, more grateful, more passionate and more aware. And in a way, it makes many people better than who they were before, if you're able to learn the 'right' things from challenges.
Beautiful, and I have no doubt your dance card will always be full. xo
This is really interesting. I've never watched West Wing and had no idea Martin Sheen's character had the same kind of MS as us. Hmmm...! I may watch an episode or two now.
I have to admit that MS *did* change me, but only in that it made me more determined to accomplish things others might think I may be unable to accomplish because of the disease. And it made me stop being a perfectionist (well, on most things). So it did change me, but for the better, I think.
Great post. Got me thinking.
[…] Changing The Face Of Disability Into The Face Of Ability And How Hollywood Helped Us Change It […]
Hi, Cathy -- I really enjoyed your guest post on Stumbling in Flats and wanted to pop by your blog. Loving it!
I never knew there was a character with MS on The West Wing; I'll have to check it out! It's always nice to see Hollywood "get it right," as you noted.
One of my longest and dearest friends has MS. She has had some serious downs and challenges. And she has won a national sports competition, been named an nspirational leader for an organization that covers 82 countries, and managed to be a loving mom and wife. Highs and lows. Highs and lows. Kind of sounds like life regardless of ability status, eh? Keep it up Cathy as you are helping those who come behind, alongside, and ahead!
What a wonderful post--you are an empowered spirit in every sense of the word Cathy--what a lovely guiding light you are in the world.
You are one of the most positive, uplifting people I know. I am glad to call my friend. Someday we shall meet in person, and I shall hug you, and say,"Cathy, how did you get so damn smart?"
Hugs to you. Keep doing what you do. 🙂